~ Musings of a Bean Counter

Bladder Exstrophy

I was born with Bladder Exstrophy, back in the Ice Age when wooly mammoths roamed the earth. Back then there were no support groups for parents, family members or even BE patients. We basically rolled up our sleeves and coped as best as we could. Fast forward a couple decades and there are multiples of resources for those looking for information and support. Basically, today’s mum & dad and their BE/CE child have access to medical information which was not readily available back during the Ice Age.

What confounds me, when I read messages from parents and family members of BE/CE patients is how difficult it is. How their child is suffering from a major case of depression and shame. While I was growing up my parents never allowed me to be ashamed of my exstrophy — why be ashamed of something I have no control over.. it would be like being ashamed that I was born with brown eyes instead of hazel, nothing can be done about the past. My parents raised me to be strong, being able to hold my head up high and deal with my birth defect in a straightforward manner.

I’ve had an interesting surgical history – first surgery in June 1971 at Sick Kids, while still an infant. Next in 1975, then 1983, 1988, 1992, a few teflon injections, 2007 .. and several angioplasty procedures to insert a PIC cos I have crap veins.

I’ve had NG tubes shoved down my nose and into my stomach, many IVs, way too many blood draws, a cut-down when I was 4 while in hospital (rushed into emergency midnight surgery), found out I have a slightly smaller than normal aorta, low blood pressure, reflux of the left ureter AAAANNNDDD I’m lactose-intolerant to cap it all off. All of this crap and I have never been depressed over my situation; annoyed that my body doesn’t obey me, but never depressed.

Am I a special case of a happy go-lucky individual? Nope. I can be moody as all hell. But the reason I have not been depressed or ashamed of my exstrophy is because of the way I was raised by my parents. So it angers me when I see parents of underage BE patients lamenting “my poor baby, his/her life will never be normal”… what is normal? If you hold onto such an attitude the child will pick up on it. Exstrophy, for my parents, was devastating in that they had no one for support. But they accepted my exstrophy as a learning experience from which both they and myself could grow from.

I am a strong person. I have been dealing with medical suppliers since I was 13 years old, booking my own appointments since I was 14 — I was encouraged to take control of my own care. And if these parents did the same for their kids I wouldn’t be surprised if the next generation of BE adults will be just as strong and capable.

6 thoughts on “Bladder Exstrophy”

I was born with exstrophy as well I however have always kept it a secret like it was something to be ashamed of and it has turned me into a bitter self loathing mess I have never opened myself up to anyone and I am very loney as a result

it’s nothing to be ashamed of. we have bladder conditions which make us different.

unfortunately having a pee problem is still very much socially icky. it’s much sexier to say one has a hole in their heart or they have diabetes; but to say that one has sexual dysfunction or needs to pee more often, still rather taboo.

each BE case is different, not all of us go through so many surgeries. I know one lady, who I met back in 1992 who’s gone through 30+ surgeries. I’ve had 8. Some have only a couple.

the biggest thing to look out for is the protection of the kidneys. Each kidney infection causes damage to the kidneys, and with a reflex it is extremely important; my reflux is a Grade 2, which means it’s something to be aware of but nothing to panic over. Your daughter’s urologist should be able to advise you with regards to safeguarding the kidneys.

One thing that people tend to do and it isn’t healthy is trying to hold in their pee, waiting longer than necessary to go to the toilet. Obviously right now your daughter is on diapers, but growing up it will be necessary for her to remember to pee on a regular basis, and not to hold it in .. cos with a reflux the urine can back-track up to the kidneys, which isn’t good.

but at the end of the day your daughter, like myself, has a pee condition. in ever other way she will be able to lead a normal life — she’ll be able to play, hang out with friends, date, work .. she’ll just be a little more aware of her bladder functions than most folks.

Hi My name is Matthew and i live in Australia and i was born with Bladder Exstrophy Back in 1986.

I was lackey to of hard the best Australian Dr at the time when i was Bren And i have all so at that time i was pout in to A medical journal of that time be cause i did so will and the work the Dr’s did was the bust for 1986.

It’s a hard and long Road we are on with Bladder Exstrophy when i was born the were no support groups Hear in Australia and that was very hared on my mum and dad and and that rest of the family but know with the Net and Google we are not in the dark any more as we can meet people with Bladder Exstrophy and see what is new in the way they fix it know

But it’s very hard road with up’s and down’s but with help and support groups it has help out a lot for the people with Bladder Exstrophy